A COTA Family is Celebrating World Marrow Donor Day on September 19th

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September 1, 2020 World Marrow Donor Day is celebrated globally on the third Saturday of September, which is September 19th this year. The main objective of World Marrow Donor Day is to thank all tissue donors worldwide. This day raises awareness of the many children and teenagers in need of a life-saving tissue transplant who are unable to find a match within the global registry of 34 million donors. An Arizona transplant family, however, will likely be spending this day thinking about the young man from Germany whose registration as a bone marrow donor saved their daughter’s life.

Melissa and Tim DeLaney of Tempe, Arizona, felt beyond blessed in February 2009 when their first daughter, Anna, was born. Their blessings were indeed multiplied in July 2012 with the birth of their second daughter, Margaret. Life seemed as perfect and normal as possible for this family of four who loved each other and simply loved life.

In December 2015 Anna was diagnosed with mononucleosis, which is caused by the Epstein-Barr virus (EBV). The mono virus affects the lymph nodes, throat, salivary glands, liver, spleen and blood. It typically makes a child feel tired and achy all over. While Melissa and Tim were not particularly alarmed at the somewhat common childhood diagnosis, they immediately started following the doctor’s directives for getting Anna healed and back on her feet again. While that is the case with most who are diagnosed with mono, it was not to be the case for Anna. Instead the first half of 2016 was full of high fevers, extremely high levels of the EBV in her blood and liver and appointments with a multitude of specialists including those in hepatology, rheumatology, infectious disease, cancer and blood disorders. Dozens of tests were ordered and performed with each specialty consulted to try and figure out what was causing Anna’s illness.

Anna Needed a Bone Marrow Transplant

On June 1st they received very challenging news. Anna was diagnosed with Chronic Active Epstein Barr Virus, which is an extremely rare blood disorder that rendered her body unable to fight the virus and in doing so infiltrated her liver and T-cells. Both Tim and Melissa were unprepared for the news her medical team shared — without a bone marrow transplant, Anna’s prognosis was bleak.

A transplant social worker at Phoenix Children’s Hospital talked to Tim and Melissa about the long-term, transplant-related expenses that could potentially be associated with Anna’s medical journey. A Children’s Organ Transplant Association (COTA) family in Arizona, the Dwyer’s, had also spoken with Melissa about their son’s need for a bone marrow transplant and the role COTA had played, and continues to play, in their family’s transplant story. After talking with the Dwyer’s and reviewing information from the transplant social worker, Melissa called COTA on June 8, 2016.

Melissa reviewed all of the information with Tim and on July 19th the necessary paperwork was received at COTA’s headquarters and Anna officially became part of the COTA Family.

COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA in honor of Anna D are tax deductible to the fullest extent of the law, and these COTA funds are available for a lifetime of transplant-related expenses.

According to Tim, “In the beginning of our daughter’s transplant process, we were very uncomfortable with the idea of accepting money from the dozens of friends and family members who offered to help offset the costs. From the very start, COTA provided an opportunity for our community to support this organization that would be such a help to us, knowing that funds contributed to COTA in honor of Anna would be used only for transplant-related expenses.”

Finding a Marrow Donor Through Be The Match

During the summer of 2016 the DeLaney family started the process of searching for a bone marrow donor for Anna. Anna’s sister was tested and was not a match. They then turned to the Be The Match registry to find an anonymous donor. After several disappointments, Tim and Melissa learned there was a near-perfect match in the registry. Because Anna was at risk of developing lymphoma, the decision was made to go with this donor so that Anna could get to transplant as soon as possible.

On August 9th Tim posted this blog update on Anna’s COTA website: This morning we arrived at Phoenix Children’s Hospital, which will be our home for the next 6-8 weeks. Anna woke up with an optimistic spirit, knowing that the journey she is beginning will make her well and allow her to return to the life a seven-year-old should be experiencing. Tomorrow, Anna will begin a week of chemotherapy to eliminate her bone marrow to make room for the new marrow. It will be a challenging month or so ahead — days of pain, exhaustion, sickness and loneliness. I can think of no one better to take on these trials than my brave and beautiful daughter, Anna Mae DeLaney.

On August 15th Tim posted this update: Anna completes her last dose of chemotherapy today. So far she has been a trooper. She has pretty much stopped eating food, which is expected. She will have a day of rest tomorrow and then receive her bone marrow transplant on August 17th. We know her donor is a 32-year-old male from somewhere in Europe. He will go to a local hospital to undergo his procedure, probably late today or early tomorrow. Then a special medical courier will fly directly to Phoenix with his cells and hand deliver them to Phoenix Children’s. Amazing, right? His marrow, her new cells, will literally save her life. I hope this young man knows how special this act of human kindness is to our family.

On August 17th Melissa posted this on Anna’s COTA website: Well, it is done. Anna has received her new cells and now we wait and watch. Wait for engraftment. Wait for side effects to kick in. Anna woke up in a great mood and was silly all day. We played games and Just Dance on the Wii. Being able to hold the cells in my hands before she received them was amazing. I just cannot stop thinking about our donor today. I am so thankful for his generosity and kindness. I will never forget the look on Anna’s face when we heard the nurse say the donor cells had arrived — a huge smile, as if she was born ready to take on this challenge.

COTA Continued to Support Anna’s Family Throughout Recovery

Near the end of September Anna was discharged from Phoenix Children’s but her journey was far from over. Over the next 18 months she was completely immune-suppressed and could not go anywhere except the family’s home and the hospital for weekly checkups. Anytime Anna developed a fever over 100.4 the family had to go to the ER for an automatic 48-hour stay to rule out any infection in her Broviac line. She also developed a severe case of graft-versus-host-disease (GVHD) that only responded to high levels of steroids.

Throughout these challenging months filled with stress and fear, both Melissa and Tim updated Anna’s COTA website followers regularly. Together Tim and Melissa wrote a blog entitled, “Why We Chose COTA” that included these thoughts:

We have no idea what Anna’s future healthcare needs will entail. We know she will need ongoing care and medical supervision for a very long time. Even as an adult she will need regular check-ups that go beyond an annual physical. COTA is an incredible organization. Supporters can donate (tax deductible even) in honor of patients, like Anna, and those funds are only used for transplant-related expenses. Expenses are submitted directly to COTA. Knowing COTA is there gives us a sense of peace and we are so appreciative.

In April 2018 Anna finally was able to stop taking immune-suppressing medications. This was a huge milestone and allowed Anna to go back to school and reconnect with her many friends who had missed her terribly. In June 2018 Anna surfed for the first time on a family vacation in Coronado, California.

On August 16, 2018, Tim blogged: Today we are celebrating Anna’s Second Re-Birthday, marking exactly two years since her bone marrow transplant. As we reflect on the last two years, we are truly in awe of how far she has come. Anna officially, and finally, has no restrictions. She began fourth grade just like any other nine-year-old. Her bone marrow is now made up of 100% donor cells. It has been a long time since we posted an update. But what can we say? We have been busy enjoying the world again. I hope that future posts are nothing but updates on Anna’s achievements and happy times. She fought hard, almost every day, and handled her situation with grace and dignity. I know she is going to grow up to do great things. She has already taught me the meaning of courage.”

In February 2019, the entire DeLaney family had the amazing opportunity to meet Klaus, the young man from Germany who, through Be The Match, donated his bone marrow to save Anna’s life. It was truly an unforgettable experience for this COTA family. It was also the month that Anna got to celebrate her 9th birthday. The best gift? Her immune system was growing and her B-Cells were coming in strong, which is a big step in a bone marrow transplant recovery process. She also got to host a slumber party with several of her friends who have been an important part of her journey. As her family posted on her birthday, “We are celebrating her birthday but also the light at the end of a very long tunnel. Happy Birthday to Our Fighter! You have taught us so much about how to appreciate life on a daily basis.”

In early August, Anna started middle school as a sixth grader. And just a few weeks ago on August 17th, Anna celebrated her Fourth Re-Birthday, which marked four years since her life-saving transplant. According to her parents, Anna loves reading, swimming, playing with her very special friends, making music, doing art and making sure her dog Romy is close by. Despite the normal worries and fears most of us have regarding COVID-19, the DeLaney’s say they have no additional anxiety because of Anna’s history, joking, “She received one of those high-performance German immune systems, thanks to Klaus.”

Indeed Tim and Melissa have much to celebrate these days, including being part of the COTA Family. Recently they said,

“The Children’s Organ Transplant Association (COTA) has been a tremendous source of comfort for us. We are fortunate to have incredible health insurance, but we neglected to consider the loss of income that occurs when one parent has to stop working to care for an immune-suppressed child. Since transplant we have relied heavily on COTA for support. As hard as transplant was physically for Anna, the mental journey was tougher for the whole family. We have enlisted counseling and related services to assist all of us with our ‘new normal.’ Having COTA funds available has allowed us to focus all of our energy on Anna and will continue to allow us to do so … for a lifetime.”

Happy Re-Birthday, and Many More, Anna from your COTA Family!

Be The Match is the world’s leading nonprofit organization focused on saving lives through marrow and umbilical cord blood transplantation. Every three minutes someone is diagnosed with a blood cancer. Seventy percent of patients do not have a fully matched donor in their family; therefore, they depend on BeTheMatch.org.

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Fundraising for Transplant-Related Expenses

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